Thursday, March 11, 2010

Some stuff going on with Rylie

On Tuesday Vince took Rylie to her annual eye exam. She sees the eye doctor each year for her Optic Nerve Hypoplasia and astigmatism. Right away the doctor notice that her optic nerves were swollen. That is very serious and she was sent right to the emergency room.

When we arrived at St. Chris's she had blood work which was normal and a catscan which was also normal. They wanted to send us to CHOP, but CHOP wanted St. Chris's to finish up with all of the neurological test before they sent her.

They gave her a spinal tap( that was a horrific experience for Rylie) Her levels were elevated. They then admitted her to St Chris's with an MRI ordered for the next day.

The next day we were told the MRI machine was broken. They wanted to transfer her to CHOP for an MRI, but CHOP was too backed up.

In the mean time she was seen by a neurologist.

All the doctors seem to agree that she has Pseudotumor Cerebri. They put her on medicine to treat it for the time being and discharged her. She is scheduled for an MRI next week at Abington hospital. The whole not being able to get an MRI thing was an ordeal!!! I called Abington myself to see if they did pediatric MRI's.

Today she is refusing to walk and seems to be pain. I'm worried that this might be from the spinal tap. She keeps saying her belly hurts(like it's sore or something). She seems fine otherwise. She is eating alittle and drinking and playing on the couch, she screams though when I make her get up to walk. I called the pediatrician and they said to bring her in. Vince is taking her over there right now as I write this. I'm also wondering if she might have a UTI, because she hasn't gone potty all day. Maybe that is why she is in pain???

I'll update later.


RK said...

Holy cow...that's scary. I'll be watching for the latest info and praying they can find some answers quickly.

Sharon said...

Thinking of you, take care!

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